Patient Comfort? Studies of dying cancer or ALS patients with anorexia:  Little hunger or thirst  Any thirst can be treated with mouth swabs and ice chips  Sense of euphoria (endorphins)  Goes away if fed  Patients were left alone more Gillick MR. NEJM, 2000

Comfort? Eating is pleasant!  depriving a person (who wants to eat) of the pleasure of eating does not increase comfort Pulling out the tube  Return trips to GI or IR  Restraints More stool and urine  Caregiver burdens high Finucane T et al. JAMA 1999

Slow hand feeding Survival can be substantial despite emaciation and poor po intake Human, nurturing, time for closeness with loved ones Finucane TE, JAMA, 1999

Caregiver Stress

Why bother? Caregivers are at higher risk for:  Medical problems  Depression and anxiety  Financial problems Dementia caregivers are especially challenged due to:  Protracted length of time of caregiving  Difficult behaviors  Lack of appreciation from the patient  Need for intensive involvement with the patient

Why bother? Supporting the caregiver helps the patient:  Less depression  Less agitated behavior

How to help? Support groups Education about the disease and how to be a caregiver Adult day care Hospice (for patients with advanced stage)

Resources (Alzheimer Association- education, info on clinical trials, local support groups, Safe Return program, much more) (State of Alabama Dementia Education and Training Act sponsored education site) UAB Alzheimer’s Family Program (205) (one on one counseling, support groups) (Alzheimer’s of Central Alabama- info on clinical trials, adult day care scholarships, WanderGuard, local support groups)